The Art of Living In Pain

I am responding to a post by a beautiful blogger.

Today I was moved by
Turning Pain Into Art this blog post by Jackie Fox. She's amazing and often inspires me reflect deeply on topics.

I just returned from a doctor's appointment where we only addressed pain. I felt like I was wasting time, his time, my time. In fact, I was a little apologetic throughout the appointment. "I put fentanyl patches on my dad and push food and meds through his feeding tube. His mouth and skin sores make mine look like NOTHING. I get this what I'm telling you is in comparison so minimal. Yet, this is where I'm at. I cried in front of my friends the other day because I have pain. I have shooting nerve pain. Today was my appointment. I'm here."

In my own way I was letting him know that I KNOW it could be worse. *I* could be worse. Things could be worse. Yet, I'm at my tipping point.

When people wear insulin pumps and it gets too low or too high an alarm goes off alerting them and the people around them. They can test their blood. With lupus or other chronic pain there is no alarm for PAIN. There are blood indicators for ILLNESS and blood titers that say, "Yip, you HAVE this disease" but nothing that says, "Yes- your pain is THIS HIGH TODAY" or "your joints are THIS SWOLLEN TODAY."

And - even so, when I have to take it easy, I feel apologetic. I am often the slowest one in a group of fast (or normal speed walkers). I miss the bus or train or have to walk slowly down or up stairs. People have to wait on me. I feel GUILTY. I often worry that people will begin to resent me. And... I worry that the resentment over catering to ME AND MY SLOWNESS (or my needs) will build up. I'm being both practical and honest when I admit this.

You can only miss so many trains or look for elevators before you just annoy people. Or- your mood can only take so many swings from the pain before (and you cry in front of your friends) before you are considered a lose cannon. THIS is why I usually don't answer the phone when I feel my worst. But sometimes I get caught out with it. Then I have to say, "I'm hurting. I'm in pain. I feel bad. Thanks for the love and support."

But how often can one person do that? How often?

I have lived my entire life working to be MORE than a woman with illness. More than my pain. MORE than someone who has an illness identity... yet... guess what. Sometimes it happens.

Once - when I was taking an improv workshop a wise woman said of our body centered workshop that our characters would simply be informed by whatever happened to us. We walked around the stage and let our CHARACTERS BE WHO THEY WERE. I suddenly was a character but I was still in pain. The pain didn't let me JUMP. My character didn't jump either. My character was NOT in pain. It was in this moment that I began my "great performances" where I just lived my life.

I can DO life anyway.

Max (who always had great hair) taught me to keep on in spite of pain. She had endured multiple spine surgeries, had a spine pump, and was on numerous pain medications. She would come to my house in makeup and with her hair done. She was economically spent, but she was energetically amazing. Even on her awful days she would MAKE ME get up, get dressed, and LEAVE MY HOUSE even for 20 minutes. She knew that extraverts NEEDED to be around people.

She knew that we start to die inside without attention and talk and that dressing up is OUR WAY of saying "FUCK YOU PAIN." And so she made me wear cute bras, cute underwear, get cute haircuts and color, and wear awesome lipcolor - EVEN ON MY WORST DAYS. It is why I wear funky glasses. I do it because Max (who always had great hair) taught me that saying FUCK YOU to pain was not about anything other than LIVING LIFE ANYWAY.

Pain won't go away. Life is still there. So I live. I cry. I have awful moods. And I hope that my friends love me even when I do it all badly and mess up. It is work to move through life as a human but it is an art to do it chronically ill and in pain.